News

Cures 2.0 Call to Action

Five years ago, we initiated a “Call to Action”, that included a nationwide request of patients and their families to join us in an effort called “21st Century Cures”. Our combined efforts led to the enactment of the 21st Century Cures Act in 2016. Today, the 21st Century Cures Act is helping to advance medical research and foster a new …

Special Delivery…

BethAnn Telford, an endurance athlete and brain cancer survivor, advocate for brain cancer patients–especially children, made a special delivery for the DIPG Advocacy Group this past week on Capitol Hill. A letter to the leadership of the Energy and Commerce Committee in the House of Representatives, the Speaker of the House, and Committee Staff was first drafted on October 18th …

To Members of the Childhood Cancer Caucus and House Leadership in Matters Affecting America’s Children

Re:  H. Res. 114, the DIPG Awareness Resolution, #Moonshot4Kids Sept. 7, 2019 To the Congressional Caucus for Childhood Cancer and all Members of elevated influence in the House of Representatives concerning America’s children: Thank you for considering this letter and the H. Res. 114  information being distributed among all members of the House of Representatives.  Because of your position of …

DIPG as Ambassador to Public for Childhood Cancer

from our packet to Congress–use it! In support of H. Res. 114…why? Here: The Public needs powerful examples attain sufficient awareness to pressure Congress. If we want childhood cancer legislation like STAR and RACE to truly be effective, to have its allocations approved, to build upon and allow greater development and support for pediatric research, the Public needs to put pressure …

To the Leadership of the House of Representatives H. Res. 114, the DIPG Awareness Resolution

Sept. 3, 2019 To the Honorable Speaker Pelosi (CA-14) of the House of Representatives​, to House Majority Leader Hoyer(MD-5), House Minority Leader McCarthy(CA-23), and to the Honorable House Majority and Minority Whips, James Clyburn(SC-6) and Steve Scalise(LA-1): To Chairman Pallone(NJ-6) and Ranking Member Walden (OR-2) of the House Energy and Commerce Committee, and Chairman Eshoo(D-18) and Ranking Member Burgess (TX-26) …

“Moonshot4Kids” at Monje Lab: DIPG Families Advocate for Increased Pediatric Cancer Research Funds

From this last May 17; we’ve come so far since the National DIPG Awareness Resolution was first introduced in 2016. Let’s get it over the finish line. June 7, 2019 | Mia Brozovich NackeCOMMUNITY OUTREACH, EVENTS, PEDIATRICS, RESEARCH AND INNOVATION. Families who have lost children to Diffuse Intrinsic Pontine Glioma, a fatal brain tumor with a median survival of 9-10 months, met with Stanford pediatric …

Real-Time May Day on Capitol Hill: DIPG Advocacy Group’s Relentless Fight for Children with Brain Cancer In a Culture of Indifference

It’s not such a rare cancer in children; it’s the 2nd most common variety of pediatric brain cancer, and God help you if it crosses your path. WASHINGTON (PRWEB) MAY 01, 2019 Imagine hearing, after the brief onset of some unusual symptoms, that your child is going to die, that there are no viable treatments and you must take him or …

To the Members of the Energy and Commerce Committee, and Sub-Committee on Health

The missing ingredient is greater public awareness to the chronic lack of adequate research funding for pediatric cancers, most of which are deadly, marginalized as rare, and devoid of solutions.   Thank you for considering this and the attached information being distributed among all members of the House of Representatives.  Your position on the Committee, and consideration of support for this …